NORD (National Organization for Rare Disorders)

Business Profile

Core Value Proposition

NORD provides education, patient assistance programs, clinical care resources, research support, and policy advocacy to improve the health and well-being of people with rare diseases.

Target Customer

Patients with rare diseases and their caregivers, clinicians and researchers, patient organizations, healthcare policy makers, and donors/partners involved in rare disease advocacy and support.

Key Differentiator

A holistic, nationwide ecosystem that combines patient education, direct support (including financial and travel assistance), centers of excellence, research registries, and policy advocacy within a single nonprofit platform; with a long history (since 1987) of pioneering patient assistance programs.

Implementation Timeline

Value can be realized immediately through access to information and helplines; tangible program benefits (e.g., financial assistance, travel support) typically implemented within weeks to months depending on program eligibility and resources.

Pain Points

1Difficulty accessing affordable medications and navigating insurance/claims for rare diseases
2Limited access to specialized clinical care and multidisciplinary expertise
3Fragmented information and resources for patients, caregivers, and clinicians dealing with rare diseases

Key Features

1Patient Assistance Programs (drug, co-pay, travel/financial support for clinical trials and care)
2NORD Rare Disease Centers of Excellence (coordinated multi-specialty clinical care)
3IAMRARE Program (patient registry to assist researchers) and Rare Disease Cures Accelerator (RDCA-DAP) involvement
4Education and awareness resources including RareEdu, Rare Disease Day materials, and Living Rare, Living Stronger events
5Policy and advocacy through Rare Action Network, policy statements, and government engagement

Target Customer Industries

Decision Makers

1Executive Director
2CEO
3Director of Programs
4Policy Director
5Grants Manager
6Medical Director
7Patient Advocacy Lead

Client Results

1Improved patient access to medications, diagnostics, and clinical trial opportunities
2Increased coordination of care through a national network of centers of excellence
3Enhanced research progress via disease registries and funding programs
4Greater policy influence and funding for rare disease initiatives
5Ongoing education and support for patients, families, and clinicians

Competitive Advantages

1Comprehensive, centralized resource hub for patients, clinicians, and researchers
2Longstanding leader in patient assistance and access programs since 1987
3 nationwide network of Rare Disease Centers of Excellence
4Structured research and data collaboration (IAMRARE, RDCA-DAP)
5Active policy/advocacy platform (Rare Action Network) and broad partnerships

Key Benefits

1Direct patient assistance for medications, co-pays, and travel for trials

2Access to a network of Rare Disease Centers of Excellence

3Research support through IAMRARE program and RDCA-DAP opportunities

4Educational resources and community events (RareEdu, Rare Disease Day, Living Rare, Living Stronger)

5Policy advocacy and engagement via Rare Action Network and public policy resources

Case Studies & Success Stories

Living with a Rare Disease: Patient Testimonial on Financial Assistance

Case #1

Ana, a patient with a rare cancer, describes how NORD's support and foundation assistance provided critical financial relief during the pandemic, highlighting the impact of access programs on patient well-being.

Additional Product Information

Product Description

A national nonprofit that advances education, patient support programs, research facilitation, and policy advocacy to improve outcomes for people with rare diseases.

Target Market

Patients with rare diseases, caregivers, clinicians and researchers, patient organizations, healthcare providers, and policymakers working in rare disease spaces

Unique Value Proposition

A holistic, evidence-based platform delivering education, direct patient assistance, research connectivity, clinical care resources, and policy influence to empower the rare disease community nationwide.

Technical Requirements

Not specified in content

Pricing Model

Not a product with standard pricing; funded through donations and partnerships; includes donation options (Donor-Advised Funds, Stock, Planned Giving) as noted in site content

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